News

More Than 90% of Rare Diseases Are Still Without FDA-Approved Treatment

Did you know that more than 90% of rare diseases are still without an FDA-approved treatment? On November 19, 2021, the U.S. Food and Drug Administration approved the first drug to improve growth in…

Rare Disease Day

Equity for Those Living with a Rare Disease is Equitable Access to Diagnosis, Treatment, Health, Social Care, and Opportunity

Equity for those living with a rare disease is equitable access to diagnosis, treatment, health, social care and opportunity. WHAT IS EQUITY?Equity in practice means meeting people’s specific needs and eliminating barriers preventing their…

Cardiovascular · Rare Disease Day

Those with Achondroplasia are at a Higher Risk of Hight Blood Pressure and Heart Disease

We’re halfway through February! Which means, we’re halfway through Rare Disease Month! In honor of Valentine’s Day, this post focuses on heart health. Did You Know that February is also American Heart Month? Due to…

Rare Disease Day

Any Disease Affecting Fewer Than 200,000 People in the U.S. is Considered Rare

Any disease affecting fewer than 200,00 people in the United States is considered rare. Today, 25+ million Americans are living with a rare disease. Did You Know that 1 in 25,000 children are born with achondroplasia?…

Rare Disease Day

70% of Genetic Rare Diseases Start in Childhood

70% of genetic rare diseases start in childhood. Many rare diseases may result in the premature death of infants or can be fatal in early childhood. 80% of children with…

Rare Disease Day

Kickoff to Rare Disease Month

Did you know that rare diseases affect an estimated 350 million people worldwide? According to the National Organization for Rare Disorders, achondroplasia, the most common form of dwarfism, is considered…